Integrating palliative care for patients with heart failure
Crespo-Leiro, 2018Diop, 2017Hill, 2020Kavalieratos, 2017Maciver, 2018Murray, 2017Slawnych, 2018Sobanski, 2020
Heart failure is a progressive syndrome in which structural or functional impairment of the heart reduces ventricular filling or ejection of blood. This results in cardiac-related symptoms such as breathlessness, but patients also experience other physical and psychological symptoms, with functional, psychosocial and spiritual consequences. As heart failure progresses, these symptoms and consequences, acute complications, hospitalisations and palliative care needs increase. A high proportion of patients spend long periods of their last year of life in hospital. Management often involves intensive therapies (eg intravenous diuretics, vasoactive drugs, temporary mechanical circulatory support) which may require rapid decision-making when used acutely, or long-term treatment options (eg cardiac surgery, heart transplantation1) which requires careful, structured decision-making. These factors highlight the importance of early integration of a needs-focused, palliative approach to care alongside disease-orientated management for heart failure. Palliative care may involve referral to a specialist palliative care service. Principles of palliative care for patients with heart failure summarises the principles of palliative care for patients with heart failure.
Collaborate with, and define the roles and responsibilities of clinicians, services, families and carers. Consider whether or when to refer to a specialist palliative care service—see Who provides palliative care? [NB4].
Educate the patient and their carer(s) about the prognosis, if appropriate—see Overview of communicating with and supporting patients with palliative care needs.
Discuss the patient’s preferences, values and goals of care initially and continue to review.
Support early and ongoing advance care planning, including discussion of resuscitation and hospitalisation.
Identify and support emotional and psychosocial needs.
Anticipate and plan for transitions across various settings, and acknowledge patient and family preferences—see Where is palliative care provided?.
Create and maintain an individualised disease management plan to address current health problems and those expected to arise:
- Manage symptoms and complications, including creating a symptom management plan[NB5].
- Plan an approach to modify or stop treatments as the illness progresses (see Decisions about withdrawing or withholding treatment in palliative care), including drugs and implantable cardiac devices (if present).
Support the family and carers.
Support patients and their families and carers experiencing loss, grief and bereavement.
Prepare for the last days of life.
NB1: It is often appropriate to introduce palliative care from the time it is recognised that a patient has progressive, life-limiting illness; palliative care can be continued alongside disease-orientated management for heart failure.
NB2: Aspects of palliative care may need to be introduced or revisited depending on patient and carer needs, and the clinical context.
NB3: Caring for patients with palliative care needs can be personally and professionally demanding—for further information and advice on building resilience and avoiding burnout, see Healthcare professional wellbeing in palliative care.
NB4: Consideration of transplantation, regardless of eligibility, should integrate a palliative focus, including referral to specialist services, if available. Patients may have significant palliative care needs, deteriorate or die while waiting for a suitable donor.
NB5: The Heart Foundation website has heart failure action plans available in different languages.
It is preferable to introduce palliative care early for patients with heart failure because this can:
- optimise quality of life
- support early advance care planning
- reduce symptom burden and hospitalisations.
For general benefits of introducing palliative care early, and considerations to inform the approach, see Introducing a patient to palliative care.
Approximately 50 to 70% of patients with heart failure die within 5 years of diagnosis McDonagh, 2021. Up to 10% of patients with heart failure have advanced disease that is associated with a poor prognosis; estimated 1 year mortality ranges from 25 to 75% McDonagh, 2021. Indicators of increasing palliative care needs and limited life expectancy in patients with heart failure provides indicators of increasing palliative care needs and limited life expectancy in patients with heart failure. The illness trajectory of heart failure is unpredictable because of a high incidence of sudden decline and death—see Common illness trajectories for people approaching death for an illustration of a common trajectory.
advanced age
diuretic resistance
unplanned hospitalisation for decompensated heart failure or a related diagnosis
severe and persistent symptoms of heart failure (NYHA Class III or IV) [NB2] [NB3]
poor kidney function
cardiac cachexia (cachexia caused by severe heart failure)
refractory hypotension requiring withdrawal of drug therapy
severe cardiac dysfunction [NB4]
NHYA = New York Heart Association
NB1: Also consider general factors when deciding if a patient requires palliative care; see Introducing a patient to palliative care.
NB2: Patients with NYHA Class III heart failure have marked limitation of physical activity. They are comfortable at rest, but experience undue breathlessness, fatigue or palpitations with less than ordinary activity.
NB3: Patients with NYHA Class IV heart failure experience discomfort with any physical activity. They can have heart failure symptoms at rest that worsen when any physical activity is undertaken.
NB4: For the definition of severe cardiac dysfunction, see the Heart Failure Association of the European Society of Cardiology position statement.